First appointment for PN diagnosis

[purdy]

I am not having much luck with this forum, but here goes. I am due to have my first appointment with a Neurologist specialising in PN treatment. So I can go in with a little knowledge, what tends to be the first thing they do? Medication, tests or something else?

[nyt]

The diagnosis should be based on the Nantes criteria. The dr. should do a complete exam which will include looking for Tinel signs. Depending on the dr. you see some will do nerve conduction studies. Some dr.'s will order a pevlic MRI if you haven't had one to make sure there aren't any other pathologies that might account for the diagnosis. Two places do specialized MRI's looking specifically at scarring of the pudendal nerve: HSS in NYC and St. Joseph's in Phoenix. There is also MR Neurography (MRN) done at a few locations in the US but only Dr. Filler in CA can read those. I'm not sure how many insurance companies will pay for a MRN but they will pay for MRI. Most dr.'s require pudendal nerve blocks to confirm the diagnosis. Someome dr.'s will try botox to make sure the pain isn't due to spasm of the muscle around the pudendal nerve. Some dr.'s will also want you to try some pelvic floor PT.

Medications are always the first line of defense for neuropathic pain. They usually start people on tricyclic antidepressants and/or Lyrica. There are other classes of drugs that are used for nerve pain that many dr.'s use if Lyrica or tricyclics don't help. Choice of medications is really a trial and error to find out what works to decrease your pain.

[purdy]

Well, my first experience of trying to locate one of these specialists is horrendous. I have a wait of 4 months before an appointment. That is on top of 6 months of my Neurologist not doing anything, and just brushing this problem under the carpet! Angry isn't the word.
I have contact Prof Roger robert, and ope he can help, and that he speaks good english. Although I feel the waiting time may be just as bad! Failing that I will be going back to the UK and paying privately for it.

[purdy]

Does anyone know if Prof Roger Robert is french or English?

[nyt]

I heard through the grapevine that he is semi-retiring and moving locations. Sounds like he is just going to do pudendal and cluneal surgeries. Anyone else on the forum hear this?

[purdy]

Spoke to his secretary yesterday and nothing noted, just awaiting a reply from him.

[Violet M]

What I've heard is that Prof Robert is French but he speaks a bit of English.

Violet